Disney Therapy!!

The day after my first chemo, I flew with my 10-year old son to Disneyland, Legoland and Seaworld.  

Here is what I did the day after chemo:

https://www.facebook.com/video.php?v=10206099043254530&l=8085014166936398467

Here is what I did on the other days.

We played, took naps, hung out and had a very good time.  Things didn't get emotional for me until Seaworld, when we did the dolphin interaction.   It was just so real and big -- the fact that this one thing, I would never, ever do, if I did not know I was going to die.    Forking the $90 over for the disc filled with pictures just felt so ....inadequate.    The finality of the once-in-a-lifetime experience, so deeply sad.

And the memory so beautiful.

Sigh.

My insurance denied the chemo that allow me to keep my hair.  The wrestling with the insurance company and the increasing awareness of bony aches and pain and liver tenderness has been taking up the little emotional bandwith I carry with me.   It's interesting how I can feel happy and fine and strong -- and not realize anything is really happening to me emotionally until a small crisis, that usually wouldn't overwhelm me, feels a bit mountainous.

So I got an expensive haircut and bought a new pair of boots.  I invested in some high quality makeup and indulged in a facial.

Cutting my hair feels strong, an act of control over a body that is slipping out of control.

But I'm not feeling the power.  Not today.

So I decided to work it through here and write up a top ten great things about being bald.

1. You don't need a swim cap.
2. No embarrassing swimsuit line shaving issues.
3. People give you spontaneous, heartfelt gifts.  All the time.  Everywhere.
4. You don't feel guilty spending $200 on makeup and earrings.

....  I'm having a hard time thinking of any more after 4.  

Sigh.

The Armies of Wahl and Harrington

It's Dr. Harrington's Office!  It's Dr. Harrington's Office!! She has room for me!

My breast surgeon has always carried a mythical quality about her.  She's mom to her young children and close friends and running buddies with one of my teaching colleagues at school.

But when I see her for surgery?

She's Aragon.

She commands power and respect.  She leads firmly, but with a clear vision and heart.  And she fights and slices with a precision and skill admired by all.

She defends me against evil invaders.

And I feel a little star struck when I'm in her presence!!  

In all seriousness, she's THAT good.  And her team is that good.  And I've had some time to think about what makes her and her team and Dr. Wahl and her team so GOOD.

They hire competent, smart, empathetic professionals and they keep those people.

Dr. Wahl and Dr. Harrington inspires a collective vision of something greater than each person's personal interests.    People share a LOT with me.  And when you're waiting for this procedure or that procedure, you have a like of time to share.

I have never, ever heard Dr. Wahl or Dr. Harrington's team members express anything but pride in their ability to support patients and be part of a professional, respected team.

Contrast this with the ER staff at Swedish who bragged about how much money they were making and made teasing, diminutive comments about the surgeon behind his back.

I have never, ever heart Dr. Wahl or Dr. Harrington's team members make a comment that would demean anyone, for any reason, or create an unwelcome environment.

Constrast this with the ER staff member at Overlake, who shared her Christianity and her distaste for people with tattoos, feeling my Bellevue blond bob made us ideological sisters.   (It made me very careful about what I said.  In my vulnerability, I am hesitant to come out as a GLBTQ loving agnostic and I am thinking of how threatening microaggressions become here.  I'm also thinking I should shed the Bellevue bob and be a bit more out.  Am I passing?)

The pride each of these doctors' staff members takes in their ability to help patients is uncontainable.   Muff, the nurse practitioner, explains how she has rewritten all of the medical release forms to be more patient friendly.  Dawn's warm heart and professional expertise weave the practical and the personal in only loving, supportive ways.

It's a culture they've nurtured.  And that kind of culture takes strong leadership and strong community.  You can't have a lot of turn over and keep that kind of consistent vision.

But there's also evidence of a lot of active, ongoing reflection here.  I see this in Dr. Wahl's office because I am there more often.

Dr. Wahl and her team are supporting all of us, at all stages of cancer, in a journey that forces us to grapple with death.  Managing expectations while supporting well-being is a tricky balancing act.  Your heart can be in the right place and it's still incredibly easy to step right into a patient's sensitive spot.   Somewhere, Dr. Wahl and her team are working very hard at thinking through how to frame situations, how to foreshadow what may come without instilling fear, how to read what a patient needs emotionally and how to respond to that.

Really, someone should do a discourse analysis of this woman's approach.  She is a master.  A model of discursive insight, heart, reflection and professionalism.

And she leads her team to be this as well.

I suppose that makes her Gandalf?  Nah.  She has too much female power and authority.

She's the elf queen.

Bring on the medical Marijuana OR Vicodin is NOT my friend

This is a boring post, filled with mundane facts about the last week.  Some of you like to know that stuff though.

In many senses, I'm rather happy that chemo has been pushed back this weekend.  It helps me keep my symptoms and reactions straight.  It's been a busy week.

Thursday 1/29/2015 -- All protein diet for PET Scan
Friday 1/30/2015 -- PET Scan
Tuesday 2/2/2015 -- Let's start chemo conversation with oncologist.
Wednesday 2/3/2015 Pre-Op appointment for chemo port surgery.
Thursday 2/4/2015  Chemo port surgery
Friday 2/5/2015  Echo cardiogram and...cancelled chemo.  Insurance rejection.

Best thing about this week?  I now find it relaxing and enjoyable to hang out at Swedish in Issaquah.  I get treated to warm blankets, extremely caring people, upbeat music, and well, just down time.  I get time to sit and reflect and be grateful.  I really like PET scans and echo cardiograms.  Pre-op before surgery at Overlake is also very nice.  If there were the sound of running water, you'd swear you were in the Olympic Spa.

And then there is the experience of your team getting angry for you at your insurance company -- and doing the work to support you and fight for you.

And my dear colleague Ron Holland caring so well for my students.

It's like a semi-vacation.

So my biggest concern this entire weekend?   It sounds pretty minor.  Constipation and bloating! Stress and high protein diets and lack of exercise create a very uncomfortable Suzy.    And from the morning before surgery until the day after, I gained 10 pounds.

We all get achy with constipation.  Add bone mets in your lower back and hips to that achy feeling.  It's a flashback to a bad PMS episode.  Black coffee, water and stool softeners weren't doing ANYTHING.

The surgery was AWESOME.  I have almost no pain at the surgery site and I had full range of movement immediately.    I wouldn't have even touched the Vicodin Dr. Harrington sent home with me if it hadn't been for a flaring bone met pain in my hip -- probably due to the position they had me on the table?

Unlike the pain of this summer, this pain didn't limit my movement.  But on the other hand, there was no position I could find to make it go away.  It was the same, blood raw, open wound kind of traumatic pain I had last summer, but in a smaller area.

So I tried my old standby, ibuprofen.  No effect.

I have never had to use more than ibuprofen to control pain.  Wisdom teeth, double-mastectomy, 4th degree tear in childbirth ---  None of it produced pain I couldn't control with ibuprofen.  So when I decide to take a Vicodin for bone pain, it's a FIRST -- and gives you some perspective on what the bone pain can be like.  Thank SCIENTISTS for radiation!!

I tried a single Vicodin.  No effect.  The dosage is 1-2 pills every 6 hours.
About a 1/2 hour later, I tried a second Vicodin.  It didn't seem to impact the pain in my hip much, but it knocked me out.  I slept the rest of the day, waking up when the med wore off and finding the pain the same.
Took a Vicodin before bed.  Woke up at 2am in pain.  Another Vicodin.

By morning I felt better.  So just took some ibuprofen.  Went in for the chemo treatment that didn't happen because my insurance thinks I should just suck up the extra pain and side effects of the cheaper treatment.

Went home and was experiencing pain pretty much everywhere, but not the severe hip bone met pain.  So I thought, heck, why be in pain?  I took a single Vicodin.

By 6pm, when everyone was coming home, I was agitated and anxious -- a caged tiger!  I was soooo looking for a reason to get really ANGRY at Francois.  I hard time finding a reason.  So he shot out of there as quick as possible and ran some errands.

Then a few hours later, I was calming down, but I started shivering and developing a fever.  I checked my surgery site and it looked clean.  Not tender nor swollen.    So before going to bed, I decide to Google withdrawal effects from Vicodin.

Yep.  I think that after a single 36 hour dance with this damn drug (5 pills, total) I was suffering withdrawal!  My aches and pains were probably withdrawal as well!  That drug is hell.

Time to get a hold of some medical marijuana.

I'm glad this experience happened without chemo.  It would have been hard to figure out what was causing which side effect.

Feeling really good this morning.

Chemo Time!

It's no surprise.  And we've been expecting this move since October.  So really, I've gotten three extra chemo free months.

But it's still a surprising shock to the system to have what you knew was on the horizon suddenly arrive.  It's a milepost on a journey, a marker and a reminder.  

Details?  The cancer is still the same stubborn smart cancer it's always been.  It's just that the slow creeping new tumors and growth is finally at a place where my liver could get really funky really fast.  So my oncologist suggested we "beat it down" with some chemo and then, maybe, if things go well, come back to the Affinitor to maintain for awhile.

You gotta love how she frames things!  

Let's beat this down.

Chemo won't cause me to lose my hair and I probably won't have a lot of disturbing side effects.  I'll eventually get a weird rash on the palms of my hands and feet, which is usually the side effect that ends up causing people to have to stop this particular treatment for a bit.

It's one hour of infusion every three weeks.

Tomorrow I get my chemo port put in.  Friday is my first chemo.  

I'll write more tomorrow.  Had a GREAT day with the folks at Dr. Harrington's office.

My HAPPY as expressed by Mary Szybist's poem "Happy Ideas"

 This poem expresses how I feel almost all the time.  Remember that when you read my explorations of the new, complicated feelings and responses I have to this journey. -- Suzy

Happy Ideas

I had the happy idea to fasten a bicycle wheel
 to a kitchen stool and watch it turn. 
-- Duchamp

I had the happy idea to suspend some blue globes in the air

And watch them pop.

I had the happy idea to put my little copper horse on the shelf
   so we could stare at each other all evening.

I had the happy idea to create a void in myself.

Then to call it natural.

Then to call it supernatural.

I had the happy idea to wrap a blue scarf around my head and spin.

I had the happy idea that somewhere a child was being born who
   was nothing like Helen or Jesus except in the sense of changing everything.

I had the happy idea that someday I would find both pleasure
   and punishment, that I would know them and feel them,

And that, until I did, it would be almost as good to pretend.

I had the happy idea to call myself happy.

I had the happy idea that the dog digging a hole in the yard in the
    twilight had his nose deep in mold-life.

I had the happy idea that what I do not understand is more real
   that what I do,

And then the happier idea to buckle myself

Into two blue velvet shoes.

I had the happy idea to polish the reflecting glass and say

Hello to my own blue soul.  Hello, blue soul.  Hello.

It was my happiest idea.

Mary Szybist “Happy Ideas” from Incarnadine 2013   Graywolf Press Minneapolis

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